I have managed to locate a Certified Lymphedema Therapist through University of Wisconsin Hospital and Clinics (Occupational Therapy), however I cannot find a physician (primary care or otherwise) who seems to know anything at all about my condition. I am constantly raising new concerns regarding pain and accumulating abdominal fluid, and every time my doc just says to go see the therapist and keep wearing compression. How can I know that there's not a bigger problem (like tumor recurrence) or something else that should be done to keep an eye on my condition, or other therapies that might (or might not) work for me (like a pump)?

Anyone out there found a good doctor in Wisconsin? What should someone with lymphedema reasonably expect/accept from a doctor?

I know it says breast cancer, but they should also do leg lymph. I also would call them just to make sure it is for real. LOL...just sounds to good to be true to have several docs in one area (that would be great if true).

Also, the U Wisc lists LE services as well - being a teaching hospital, they probably do have doctors involved - worth a check anyway:

Please - everyone if you know of a doctor that recognizes lymphedema and at least knows where to refer patients for treatment, please write me with the info, so I can include them on our doctors list. This is soooooo important for us.

Yes, the UW link you sent is the clinic where I've been able to access some degree of help (though they limit each patient to 5 drainage sessions, each two weeks apart, then "release" you -- I had to fight my way back in recently because the abdominal build up has gotten so out of hand).

I keep asking the garment fitter and the occupational therapist about docs they know would know something about lymphedema, and they always fail to come up with anything. I would think that other lymphers (my therapist talks as though she has at least a few patients) would talk about their docs (good or bad) and that this gossip could get around to those of us who need it!